My Leg Does Not Belong To Me

16. May 2017

There are people who feel a strong need to be disabled: they want to live without a leg, paralysed, to be blind or deaf. Studies suggest that changes in the brain play a role. How can doctors deal with those affected?

For most people it is hardly imaginable: someone who has a completely healthy body wants to get a leg or an arm amputated, or to be paralysed in a wheelchair or be deaf or blind. Some bind one arm behind their back, use prostheses, bind the eyes or spend most of their time in a wheelchair – with the aim of getting closer to the body state which they perceive to be “right”. Typical statements made by those affected include, for example: “I feel complete without my left leg. With it I’m over-complete” or, “Pitch blackness brings me closer to life, as it should be for me”.

Among experts, the disorder is called body integrity identity disorder (BIID), xenomelia or is commonly referred to as “desire for disability”. The term BIID refers to a psychiatric disorder; the term “xenomelia” refers primarily to “the oppressive feeling that a limb is not part of one’s own body”. According to already existing definition criteria, BIID refers to an intense desire for amputation of a limb which has continued over numerous years, and which is accompanied by a high level of suffering. The desire arises from the belief that one’s actual body does not match the “correct” body as perceived subjectively. In addition, other conditions such as psychosis or obsessive-compulsive self-injury need to be excluded.

With regard to the frequency of the disorder, there are no exact figures as yet. Cautious estimates assume that several thousand people are affected worldwide. What’s more, little is yet known about the causes and effective treatment approaches. Even less is known about the causal origins from which stem the desire for other physical limitations – such as to be blind or deaf. So far only one study of people who describe the desire for blindness exists under clinical conditions.

Predominantly men, often left side of the body affected

For some years now a research team led by Peter Brugger of the University of Zurich has been involved in detail with the disorder xenomelia. As part of a review the scientists produced the finding that 90 percent of those affected are men. The body part being rejected was the leg in 80 percent of cases, and more often the left than the right side of the body. Furthermore, these negative feelings in relation to one’s own limb usually arises in childhood or adolescence. Sufferers are more frequently non-heterosexual than would be statistically expected and often experience an erotic attraction to amputees.

These correlations suggest that the failure has to do with anatomical features in the brain. The right brain first and foremost is important to body awareness and the development of body image – which could explain the fact that the left side of the body is often affected by the amputation desire. Similarly, the fact that brain regions for the sensation of the leg and the sexual organs are close together could explain the relationship between desire for amputation and erotic concepts.

Network in the brain particularly active

Brugger and his colleagues believe that xenomelia is produced by the interaction of neurological, psychological and social factors. Thus studies suggest that changes in the structure and function of the brain contribute to an altered body image, in which a body part is perceived as “unnecessary”. On the other hand childhood experiences could add to the desire to become an amputee, such as contact with a person who had endured the amputation of a limb, together with an (excessive) empathic reaction. Many of those affected by xenomelia describe having had a life-changing encounter with an amputee in their childhood.

In a recent study the scientists led by Brugger studied the neural connections of the disorder more precisely. To this end they analysed the changes in the structure and functionality of the brain in 13 men with xenomelia by using a combination of so-called diffusion MRI (dMRI) and functional magnetic resonance tomography (fMRI) and compared these to a control group. It turned out that a network of nerve cell connections in the right brain of subjects with xenomelia have significantly stronger connections than in the control group. This includes regions that are responsible for sensation and movement of limbs – particularly the limb which is the subject of the amputation request. “Moreover, these and other independent studies show that cases of xenomelia involve altered regions in the brain which are responsible for physical sensation – for experiencing of the body as a whole”, says Brugger.

Until now it could only be guessed as to how these features in the brain contribute to the symptoms of xenomelia, researchers say. “We suspect that an increased connection strength between nerve cells is associated with an increased awareness of certain body parts and with a sense of ‘over-completeness’, which then leads in some people to the desire for amputation of a healthy body part”.

How can doctors deal with the desire for amputation?

Yet how can doctors in the clinic deal with the matter of a patient expressing the desire for amputation of a leg or arm? How can they recognise BIID? And how can they best support those affected? First of all, doctors are rarely confronted with BIID. The disorder is not common – even an experienced doctor can only detect it when the patient himself or herself describes a desire for amputation. “Injury marks on the arm or leg on the other hand are hardly indicative of xenomelia”, Peter Brugger explains. “This should not be confused with self-injurious behaviour”.

It is unclear what the appropriate treatment which reduces the strong distress in the long term might look like. “It is not wrong in any case to first recommend psychotherapy “, the researcher says. “It can help to better cope with the need for an amputation, to reduce the suffering of those affected and to alleviate any existing depression”. However, the desire for amputation, as previous experience shows, hardly changed through therapy. “It is advisable to also provide links to web pages of others who are affected by xenomelia”, Brugger says. “Their communication with one another can often help each of them to get their own suffering better under control”.

Can amputation be a solution?

The question of whether carrying out an amputation might be an appropriate treatment strategy is from an ethical point of view a controversial point of discussion. The victims themselves continually call for this solution – and in some cases such operations have been carried out by doctors in various countries. “Proponents argue that in modern medicine fully functioning organs are cut out in other cases – such as with cosmetic surgery or sex change procedures”, says Brugger. “Furthermore, they argue that the patient has a right to self-determination. Opponents of this approach believe that one should first try to change the amputation desire via appropriate therapy”.

Individual reports of BIID sufferers who were able to realise an amputation give the first clues to the consequences of their operation: in their study the amputation led for all of the 21 respondents to a sustained improvement in their quality of life. However, there are also reports of cases in which the desire for amputation was transferred to another body part following the long-awaited amputation. “Therefore further studies are urgently required in order to learn more about the long-term effects of an amputation”, says Brugger.

Sometimes life-threatening injuries

Because people with BIID have difficulty finding a treating physician to fulfil their desire for amputation, some of them turn to “self-help” – with fatal consequences in some cases. In order to “get rid of ” the limb or to compel an amputation, they resort to hypothermia or serious injury. How such severely injured BIID patients should be dealt with also involves difficult decisions. “In the event that the body part can still be saved, much great psychological insight needs to be present”, says Brugger. “As long as the patient is responsive, the situation should be discussed with him or her. Ultimately, it makes little sense to carry out complex operational measures if these are contrary to the wishes of the person concerned”.

There is still much more research needed in order to better understand the causes and treatments of BIID, the neuroscientist says. “An important preconditional step in the scientific discussion is that BIID be included in the most important diagnostic systems, such as ICD-10 and DSM”, according to Brugger.